Can MS Make You Sick To Your Stomach?

A woman holds her stomach in pain. A superimposed drawing of her intestines suggests her pain is caused by IBS.
I mean, obviously.

Note: This is not medical advice. If MS is causing IBS or other gastrointestinal symptoms, talk to your doctor. 

Can MS Make You Sick To Your Stomach?

You know that puffy, painful feeling you get after a massive holiday meal? The one where your stomach is stretched to the max and you vow never to eat again; but then your mom brings out the pumpkin pie and you convince yourself a “dessert tummy” is a real thing? 

As North Americans, we’re not exactly known for restraint when it comes to food–overindulging is practically part of our value system. Pretty sure it’s treason if you don’t polish off at least two heaping plates at Thanksgiving, and you clearly don’t love your family or baby Jesus Himself if you’re not eating your way through December. 

No judgement here. Food is amazing. From raspberry macarons in a Parisian champagne bar to the biggest, best curbside panini in Florence, to a cricket-topped guac in Mexico City, most of my best memories are attached to great meals. Food doesn’t just keep us alive, it gives us a reason to live.

Living for these pickles rn.

While the occasional overindulgence is normal and definitely worth it (because your dad only makes turkey stuffing twice a year), what’s not a good deal is feeling like a human circle after a kale salad or a saltless mug of bone broth. 

Guys. My tummy hurts. 


It’s baseline for me to completely bypass the satisfied feeling of a belly full of sustenance and go straight to over the belt bloating and stabby pains almost every time I eat. Except I never wear belts and overwhelmingly prefer empire waistlines. The fashionista in me doesn’t believe that “sack” and “dress” should ever be uttered in the same sentence. But when my stomach’s in charge, it refuses to be contained.

My stomach is almost always in charge.

I’m not pregnant, I have IBS. (Also, I see you looking.)

If you have MS like I do, debilitating tummy troubles might be on your list of reasons why this disease is the freaking worst.

My abdominal distress can make it difficult to sleep, exercise, and concentrate. Chronic discomfort makes me say mean things and think meaner thoughts. Socially, I’m either feeling like a party pooper or eating through pain just to be polite. 

I’ve been complaining about early satiety, stomach aches, and bloating for years. I’ve seen naturopaths and a gastroenterologist. I’ve experimented with elimination diets. I’ve gone gluten free and tried Whole30. I never ever eat legumes and I rarely eat processed food. Thanks to my Fitbit I can tell you every single thing I’ve consumed since 2017 and there is no rhyme or reason to what causes my digestive system to wig out.

Bowel dysfunction is a widely recognized MS symptom. It’s easy to pin constipation and incontinence on MS. The bowel will not be ignored. But do not underestimate the power of MS to mess with your everything. From dysphagia to diarrhea, MS can cause gastrointestinal symptoms at all stages of the digestive process. 

Figuring out what’s wrong with my MSy tummy.

Anyone who lives with anything undiagnosed and under-treated knows that the pursuit of answers can wear you down. I can only use so much energy trying to fix any one of the 247 problems MS causes at any one time. At intervals, I calm down, reassured that I probably don’t have cholera or a tapeworm. Probably. I languish in a state that more or less accepts that like so many MS symptoms, stomach issues are something I have to live with. 

But when symptoms inevitably flare again, I re-enter the soul-crushing cycle of searching for solutions. My most recent plea to a new gastroenterologist left me feeling frustrated after I was told my symptoms don’t align with colon cancer, but that he would order a colonoscopy anyway, as well as an anorectal manometry for some reason.

The prep for both these tests is brutal for anyone with a neurogenic bowel. If you’re wondering wtf anorectal manometry is, lucky you. I’m not a doctor, so I can’t claim that an anorectal manometry is more than a bit extra for most of us, but this probe feels like a pretty extreme attempt to prove what we already know about MS.

While I’m tempted to make my gastroenterologist the villain of my gastronintestinal whodunnit, I recognize that this guy was just offering me the tools that are available to him.

One of the most important Q’s empowered patients need to ask is: Is this test/procedure/treatment really necessary?

When I expressed my concerns, my GI shrugged and told me I didn’t have to do the exams if I didn’t want to. When I asked if there was anything else he could offer me, he told me to take Metamucil. (Okay, maybe he is the villain.)

Clearly, I’m on my own here. Feeling like doctors have given up on my gut, I went back to a place that never lets me down: the internet. Here’s what I learned:

MS can cause dyspepsia

The Canadian Society of Intestinal Research validates that MS can cause GI symptoms that go beyond bowel dysfunction and draws a straight line between MS and dyspepsia. Dyspepsia sounds serious and I wonder if that’s what’s ruining my appetite. But when I read further I realize dyspepsia is just a fancy word for indigestion. Indigestion is what your alcoholic grandfather has because all he consumes are Hot Rods and Labatt 50. I refuse to accept that what I’m dealing with can be as simple as indigestion. Do not come at me with a ‘drink-more-water-avoid-carbonated-beverages- chew-your-food-and-eat-fucking-slowly’ solution. I have obviously tried these things.

MS can cause Irritable Bowel Syndrome

Like dyspepsia, IBS feels like a vague non-diagnosis; the thing they call the thing that they don’t know what the thing is. IBS feels like it goes with the word “just”. As in, “relax, it’s not cancer, it’s just IBS.” And, again, I say How dare you? I am suffering here. Irritable is what I become when I order brunch and my eggs arrive over-poached. Talk to me when you change the name to Homicidal Bowel Syndrome and I might reconsider HBS as a valid possibility.

MS is a risk factor for Gastroparesis

Gastroparesis is a condition that impacts the stomach’s ability to move food to the small intestine in a timely manner, and the more I learn about it, the more I start to believe that this is what’s happening with me. My arms, legs, and even my eyes are slow and uncoordinated. Not to mention my bowel and bladder. I also have a touch of dysphagia, which throws my swallowing out of whack. When everything around and connected to my stomach struggles to work together, it makes sense to me that my stomach would also be phoning it in. And nobody’s answering.

Send a text like a normal person.

My physiatrist agreed to send me for a gastric emptying study. Sidebar: I will post about physiatry later; and no, I’m not mis-spelling psychiatry. If you can get yourself a physiatrist do so. Physiatrists are the best people alive.

Preparing for a gastric emptying study

Unlike prepping for a colonoscopy or an anorectal manometry (I swear that’s the last time I will type that vile word), the prep for a gastric emptying study was not the worst. The hardest part was the need to skip my bowel meds (magnesium hydroxide, and psyllium, aka Metafuckingmucil) for 48 hours beforehand. And sure, this sounds like NBD, but if a butterfly flaps its omnipotent wings in Timbuktu, the delicate balance of my precious bowel routine will be thrown completely off course. It will take me at least a week to get back on track.

The day of the test I arrived at the hospital at 8am to eat a radioactive cheese sandwich. Then, at regular intervals, I slid into a scanner so a tech could take pics to see how far my breakfast had traveled. 

But like, half a cheese sandwich. It’s Canada and the healthcare is free. So.
Sandwich selfie station.

I was told I could leave after my 10:30 photoshoot if the sammy had traveled far enough. When I wasn’t released until 12.30–the maximum length of the test, no matter how far that sandwich had journeyed, I felt vindicated–certain that my advanced patient-knowledge and self-advocacy had led me to the solution to my problem. No matter that the tech, who for legal and bureaucratic reasons was not allowed to give me any actual intel, cautioned me not to interpret my own results. 

As I waited for my test results I started looking into gastroparesis diets. Fruits and vegetables are the foundation of my current diet but can be problematic for GP patients. Would my gastronomic future be limited to boiled chicken and baked potatoes? What would Terry say? Of course, the good news here is bagels, because unless you have celiac disease, the GP diet gives two thumbs up to bread. Still, it felt a bit sketchy because no diet ever recommends bread.

Tolerance is accepting someone who prefers NYC bagels to (real) MTL bagels.

I got my test results by email later the same day. You guys already know what happened. In the frustrating double-edged gut-wrenching reality of the chronically ill, my test results were normal. Of course they were.

I would eat crow if I thought it would help.

MS and IBS

I can’t help but wonder if the test had been done later in the day, there might have been a different result. My legs perform dramatically differently at 8 am than they do at quitting time, so why wouldn’t my stomach? Nevertheless, I’m willing to reconsider that IBS is more complex than I give it credit for and that maybe that’s exactly what’s going on. The most compelling evidence of the potential of “just IBS” is that despite feeling like my own death is imminent, I’ve been suffering for literal years and I’m not actually dead.

I went back to the Canadian gastro site looking for IBS life hacks and found this gem

Over time, with understanding and faithful adherence to an individualized treatment plan, many patients with irritable bowel syndrome can look forward to a notable improvement in their condition. In fact, statistics show that approximately 10% of IBS patients get better each year.”

Excuse me? 10%? TEN PERCENT???

Back to the naturopath I go for more tests and guidance. Spending more of my money and time and mental and emotional real estate just trying to feel okay. 

In the meantime, if anyone knows where I can get a fecal transplant (is that a thing yet?), lemme know. I will try anything.

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What You Need To Know About MS Cognitive Dysfunction

Silhouette of a head in profile with images of turning wheels leaving the back of the head. A creative imagining of what our cognitive function looks like.
Cog fog, who dis?

What You Need To Know About MS Cognitive Dysfunction

I recently completed a stint in neuro-rehab for some much needed attention to my MS. I had a full MS glam-up with a speech language pathologist (SLP), occupational therapist (OT), and a physiotherapist (PT) who put me in a harness and nurtured some latent Cirque du Soleil dreams. At the end of the program I had a cognitive evaluation, which is why you clicked this bait–cognitive dysfunction needs to be on your radar if you have MS. 

A woman with MS stands without the help of a mobility aid. She is wearing a safety harness.
Look Ma, no rollator!

What is cognitive dysfunction in MS? 

MS can affect so many things it would be less of a bummer to list the ways it can’t mess with you. When it comes to cognition, MS can impact memory, concentration, problem-solving, verbal-fluency, and word-finding as well as the speed and efficacy at which we process and remember information. Changes can be subtle and are often overlooked, go unnoticed, or are blamed on natural ageing, but it’s important to know if MS is causing cognitive dysfunction. What gets measured gets managed.  

I’m pretty sure some cognitive impairment explains why I got mascara in my hair and eye-shadow on my ankle this morning, and why I sometimes put ground coffee in my mug instead of in the pot. I no longer keep the tube of shea butter next to the toothpaste, or my nail polish remover next to my eye make-up remover. I’m blaming MS on my struggle to identify and remember faces, though I’m not sure who to blame for the difficulty I have concentrating on The Banker’s questionable movie choices (I’m lying, I blame him).

A melted pepper grinder that was absentmindedly left on the stove. MS cognitive dysfunction can cause memory loss or distraction.
MS made me do it.

I don’t feel as quick as I used to; but truthfully, there were no major red flags to signal a serious problem. Nonetheless, I bought into the importance of a baseline–it wasn’t a hard sell. I was curious, and I kinda like taking tests. Part of me looked forward to proving to myself that my ageing brain isn’t ageing as fast as my legs. Plus, I was promised no math. I’m smart, but I’m not, like, math smart.

What’s it like to have a cognitive evaluation when you have MS? 

Keep in mind that there are a variety of cognitive function evaluations for people with MS, and your experience may not be the same as mine. 

Part one involved an hour-long intake session with a social worker (SW) on a video call (because, plague). I was asked the standard what meds are you on Q’s, but also things like where I went to school, what I studied, and what kind of work I did. This was for the SW to get a sense of how big my brain was before I got brain damage and decided blogging was a reasonable career.

The actual evaluation took 3 hours. It started at the ass-crack of 10:00, and was a half-hour drive away; so, obviously, I didn’t get up in enough time for breakfast or coffee. Not wanting to blame poor results on a lack of java, I swallowed a handful of chocolate-covered espresso beans in the car. Plus, chewing my caffeine meant I was less likely to have to pee. These are the kinds of problem solving skills you develop with MS (but, sadly were not on the test). I was a little nervous about what I was about to find out about myself, so I discreetly wore my McGill University t-shirt underneath my sweater to remind myself of my recent A in Spanish. This was another life hack; because, later, I wore that t-shirt to bed.

A woman lifts up her sweater to reveal a McGill T-shirt that she wore to remind herself that despite having some MS-related cognitive dysfunction she is still able to learn.
William Shatner and I both dropped out, but only one of us got a building named after them, so I went back.

The test started easily enough, asking me to define simple, then increasingly difficult words. When we got to “palliate” I had a Winona Ryder in Reality Bites moment. 

Fuck you, Troy.

Then I was asked what tide and music have in common, I can’t remember what bullshit I made up (The Banker: they’re both spelled with an “i”). But where I really let myself down, was when I was asked to quickly list words starting with various letters, and the first letter was ‘A’. Do you think I said ‘apple’, like a normal human person? No. I, for real, said ‘ambidextrous’. Then I said–brace yourself–Anise’. Like some kind of psychopath. The next letter she gave me was ‘S’, and I didn’t say ‘suck’ or ‘sick’. And finally, she gave me ‘F’. ME. You’re thinking this was my time to shine, but I DIDN’T SAY IT. I thought it, and then it was all I could think of. Maybe I said ‘flummoxed’, because that’s exactly how I felt. 

A list of words that start with F that are related to MS. These are words that could be used in a cognitive function test if given the letter F.
FTS. I know plenty of ‘F’ words.

Some tests were easier than others; a fact that hinted at my areas of strength and weakness. I got to play with blocks (there was a lot of hand-sanitizing), and prove how bad I am at drawing. (After I copied a sketch, SW expressed some relief that I’m not an engineer or an architect.) For the most part it went well and was even kind of fun; but I felt myself starting to crash in the last half hour or so when the effects of the 17 magic beans I’d had in lieu of breakfast wore off. The final test felt like the hardest. I had to count backwards by threes (which sounds a lot like fucking math), while remembering a combo of letters.

What happens after a cognitive evaluation?

A week after the test I had another video call with the SW and a neuro-psychologist who analyzed the results. Basically, the evaluation confirmed what I already knew. I mean, I guess I hadn’t considered that I would be a terrible architect, but it’s not something I wanted to do anyway. 

A crude drawing of a condo building that underscores the author's weakness in one section of the MS cognitive dysfunction test.
My rendering of the condo where I live. I hope I haven’t given away too much detail to any would-be stalkers.

Lucky for me, my strengths line-up with my interests. The test proved that even without the fuck word, words are still my super-power, and the real reason The Banker never wins an argument with me. My verbal fluency is “fast” and “good” (or, expeditious and cogent, if you will). There were a few annoying “glitches” that came out, but none that really affect my ability to do what I do (take selfies and talk shit on the internet.

I struggled when I got knocked off one task and had to redirect my attention. This really wasn’t news to me; but, it’s helpful to have a medical team validate the fact that if you ask me about the grocery list while I’m watching TV, I’ll tell you to pick up a shovel, a lawyer, and some Miss Vickie’s chips if they’re on sale, and even if they’re not. (I’ve been watching a lot of true crime.)  

The only area where I was a true disaster, or as they put it “showed severe impairment”, was the facial recognition test, which I knew I would tank. People have been calling me out on this for years. (Me: Nice to meet you. Them: I’ve lived next door to you FOR 5 YEARS!) If you would like to commit a felony in my presence, have at it. There’s now official documentation that I’m a useless witness. 

So, do you need a cognitive evaluation?

Like any other potential MS symptom, cognition should be regularly assessed. The National MS Society recommends screening for MS-related cognitive dysfunction once a year, and more often if you notice changes that affect your functioning. Getting a baseline when you’re first diagnosed can help detect changes later on, but many doctors wait until changes become apparent, despite the fact that cognitive dysfunction affects between 40-65% of people with MS. Knowing your cognitive strengths and weaknesses can help you figure out if you need modifications to your job or school, and if you would benefit from things like more breaks, longer exam times, a quiet work space, and/or reduced hours or workload. 

How can you protect your cognitive function? 

If you think you’re experiencing MS-related cognitive dysfunction, there are things you can do. Neuro-fatigue and increased body temperatures can affect cognition, just as they can aggravate existing MS symptoms like mobility or vision. Pace yourself, stay hydrated, and, maybe, don’t do your taxes when you’re tired. Depression and lack of sleep can impact cognition and should be treated. Many medications used to manage MS symptoms can also have a negative impact on cognition. If you have a cognitive assessment you will be offered personalized suggestions to help address any problem areas. 

Keep learning

Even without MS-related cognitive dysfunction, we all experience cognitive changes as we age. We should think of our brain like a muscle, and exercise it. Read, write, paint, do puzzles, create recipes. You don’t have to learn coding or Mandarin if that’s not your thing. Find brain-boosting activities that you enjoy, and make it fun. Our brains are amazing, and adaptive, and are good at learning to compensate. As my neuro-psychologist said, “information-seekers create more reserve and tend to have milder cognitive impairment”. 

A woman smiles over a Scrabble board. The word "bruises" is circled as a nod to how MS can lead to bruises.
“Bruises” for the win.

I’m doing what I need to keep my cognition strong so that I can continue to use my brain for important things like helping my niece with her French homework reading gossip blogs and beating The Banker at board games. What’s your favourite way to protect yourself against cognitive dysfunction in MS? 

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What You Need To Know About Bowel Problems And MS

What You Need To Know About Bowel Problems And MS

I don’t want to write this post. Bowel problems (or bowel dysfunction) in MS is a tricky topic, even for a professional over-sharer like me. I’d rather keep this side of my story on the down-low, because acknowledging this much of my secret self to strangers on the internet is a risky proposition. 

I’ve written lots about the impact of a neurogenic bladder; and yes, peeing your pants straight-up sucks, but in the language of my WASP’y grandmother, who refused to call anything like it is, my problem with number two is often my number one problem. Bowel dysfunction is an absolute horror, and for many, it’s the most distressing invisible symptom of MS.  

Wait. WTF is Bowel Dysfunction? 

Pink and brown letters say "And furthermore, fuck this fucking neurogenic bowel". It's on a pink and yellow background with giant quotation marks.

When I posted this mini-rant on Insta a few weeks ago, I was stunned to see a handful of people with MS who had never heard of a neurogenic bowel and didn’t realize the problems they’d been having could be connected to their MS. What the hell, docs? Do better. If you have MS, there’s a good chance you may be prone to bowel problems like constipation, diarrhea, and the ultimate torment: incontinence. This is bowel dysfunction (BD), and it’s a kind of a BFD. MS can feel like having a bunch of different diseases or disabilities at once, and if you have MS-related bowel dysfunction you might as well add IBS (Irritable Bowel Syndrome – emphasis on the irritable) to your résumé. 

Oh. Shitty.

No shit. Have I mentioned that I don’t want to write this post? When you write publicly you have to assume your worst enemy is reading. Well guess what Brenda, I poop my pants. Does that make you feel better? Of course it does, you troll. But I am nonetheless compelled to write about how MS can mess with bowels, because you need to know you’re not alone. You need to know there are things you can do. You really need to know that a neurogenic bowel is a common MS symptom that affects a whole hell of a lot of us. It’s miserable and overwhelming, and it can be very, very lonely. 

The author, Ardra Shephard, a white woman with shoulder-length blonde hair, is sitting in a glamorous restaurant with waiters in tuxedos in the background. She is wearing a black sleeveless dress and a pink feather boa. She is smiling and holding a glass of champagne and living a fabulous life despite having bowel problems and MS.
Here’s a pic of me living my best life, just to keep Brenda in her goddamn place.

We don’t talk about BD because of the stigma and humiliation that come with violating the social contract to put the poop in the proper poop place, that most of us have mastered by the age of 3. Humiliation is why we suffer in silence. Even if it makes you feel like you want to die, technically bowel dysfunction in MS isn’t going to kill you. Well, not directly. If you’re already a falls risk, running to the restroom when you can’t actually run can be a recipe for disaster. Everyone knows that constipation (fewer than 3 bowel movements a week) can be uncomfortable, but left unchecked, it can also lead to serious problems, like fecal impaction. Chronic constipation can cause back pain, and if you already have difficulty moving, constipation can make walking harder. And the less you move, the worse your constipation.

BD is an issue that needs addressing. Because after all, this is a medical problem. There are things that can help like increased water intake, dietary modifications, exercise—and, I’m getting pissy at myself just writing this, because I know first-hand that even though I drink the water, eat the greens, take probiotics and magnesium supplements, and follow a strict bowel routine, my careful planning and best practices fail anyway, and I’m forced to rely on the Hail Marys I learned in Catholic School. 

Hail Mary, full of grace, please don’t let me black out from humiliation; but on second thought, please let me black out so I don’t have to endure this humiliation. 

Not surprisingly, the Blessed Virgin has better things to concern herself with than my wounded dignity, and Jesus has been ignoring my texts. I’m not above seeing what kind of deal I could work out with Satan, but keeping me in misery is kind of Satan’s jam. Which means I’m on my own. And frankly, that’s how I want it. Let me hide in the bathroom for two hours in peace. 

Of course, BD is more than a medical problem, it’s a social and emotional problem too; and, the consequences of bowel mishaps are arguably worse than the incontinence itself. If you have BD, your bowel is your body’s Supreme Leader, yielding absolute power, controlling every single thing you do (or don’t do), every single day. If Vanity Fair calls wanting me to do the Proustian questionnaire, my answer to What is your idea of perfect happiness will be: total confidence in my bowel. Otherwise, all I’m ever thinking is where’s the closest bathroom, and FML if it’s down a flight of stairs. 

Managing a neurogenic bowel requires constant planning. There’s no room for spontaneity in my life. If you want to meet for coffee, I need 48 hours notice so that I can adjust my supplements accordingly. BD can be socially debilitating. There are a number of reasons why someone with a chronic illness like MS might call in sick or cancel plans at the last minute. You think we’re flaky, but it’s not easy to explain to uncomplicated poopers that you need to stay close to a bathroom. Even if you are in the circle of trust, we feel the low-key irritation of friends and family when they have to wait for our stars to align so that we can safely go out. 

Dealing with the practicalities of managing BD, along with the emotional effects, when most of us simply don’t feel we can talk about it, can lead to depression and anxiety. The humiliation of public incontinence can lead to loss of social status. BD can threaten what we believe about ourselves. Of all the things attempting to erode our dignity with this disease, navigating bowel dysfunction in a culture where continence care is still the butt of too many jokes, requires Kanye-grade confidence to maintain self-esteem.


If you’ve been betrayed by your bowel once, you remember it in excruciating detail. When it happens on the regular, you figure out how to move on. My coping strategies involve treating myself with the love and care I would give a friend in a traumatic situation, and that almost always means presents. I feel proud of myself when I take my MS knocks in stride, and maybe I deserve a new lipstick for my trouble—a reward for how fucking hard this is. By giving myself a prize instead of wallowing in shame, I’m reminding myself of my worth. I’m acknowledging that I didn’t cause this, this isn’t my fault, and this has nothing to do with my character, or yours. 

I’m not an outlier or the exception. In MS, this is it, this is normal. Shit happens. The world needs more compassion and open dialogue. Bowel dysfunction doesn’t just affect the MS community. Common conditions like Crohn’s, colitis, bowel cancer and others impact hundreds of thousands of people who are suffering silently; you almost certainly already know someone else who can relate.

I didn’t want to write this post, but there’s something cathartic about acknowledging the whole truth about what we go through with this disease. If you wanna talk shit in a safe space, I’m hosting a guided chat in the MS Healthline app on Tuesday, September 22nd at 4pm Eastern. Download the app here. Don’t leave me hanging.

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Is This A Scary New MS Symptom?

Is this a scary new MS symptom, or what?

Assuming you’ve already been diagnosed, there are days when you may find your body doing something bodies aren’t supposed to do, and you know that you’re likely experiencing a new MS symptom. Wonky vision, weak knees, and sketchy bladders, are all classic MS symptoms. But MS is a complicated mother fucker and sometimes it’s not so cut and dried. More than once, I’ve had to remind myself that not everything is MS. It’s just that 9 times out of 10, it is MS. When you have a disease that affects the central nervous system, just about anything can go haywire. 

Even worse than wondering if a new health issue is an MS symptom, is when on some level, you know it’s MS, but your doctor doesn’t necessarily agree. When I showed up in Emerg with my very first MS attack, I was told I had optic neuritis. My sudden hearing loss was dismissed. Because “hearing loss isn’t a symptom of MS”. 

I’m sorry, what? I couldn’t hear you because I’m deaf in one ear. 

Like white peacocks, or Starbucks getting my name right; just because something is rare, doesn’t mean it isn’t real. My head explodes just remembering my first taste of the medical gaslighting that sometimes comes with chronic illness. Sadly, certain experts would rather tell you nothing’s happening than admit they don’t know what to do about it. 

Which brings me to my most recent, new, and confusing (possible) MS symptom: I’ve been losing my voice. It’s sometimes difficult to talk, it’s hard to cough, and my speech gets fatigued the same way my legs do. It’s not a sexy ScarJo rasp. No. That’s not how MS plays. I sound more like Marge’s mom on The Simpsons. Though not unheard of, vocal issues aren’t a tell-tale MS symptom, so it begs the question of whether or not my hoarseness is caused by MS, or what. In my mind, of course it’s an MS symptom, because wtf else could it be?

“At the risk of losing my voice, let me say one more thing, I’m sorry I came.” –Jacqueline Bouvier

Okay, it could be other things, and I’m grateful to have a doctor (now) who takes me seriously, and will get to the bottom of this. In the meantime, I’ll try not to obsess over what a future without talking looks like. I mean, The Banker and I have a strong marital ESP game, but it’s limited to looks that mean “Save me, I don’t know this dude’s name”, “We hate her, right?”, and “Even though I asked you not to buy chips, if you eat the rest of the chips we will have a problem”.

Obviously not enough left to share.

Thanks to COVID, mask-wearing doesn’t even allow for a friendly smile or (more likely a cautionary RBF) anymore; and without words, I’m basically left with eye rolls and raised brows for casual communication, and I’ve got so much more to talk about. Like, “we hate her”, is enough said at the party, but clearly we need to dig into this more in the car-ride home.

I don’t just use my voice for gossip and complaining either. Lately I’ve been covering the French portion of my niece’s COVID-induced homeschooling, I’ve been a guest on a few podcasts, and I even used to sing until MS decided otherwise.

Me in a past-life. Every reinvention deserves a new hair-do.

There are no ‘good’ MS symptoms. They all suck, and sometimes it feels like whichever symptom is the loudest is the one I’ve decided is the worst on any given day – or any given moment. When nerve pain keeps me up at night, that’s my worst symptom. When I take something to help the pain, but it makes my legs too weak to walk the next day, my paralysis is the worst thing I’ve got going on. When I need a bathroom, and there’s none in sight, well, you get the picture.

But in the hierarchy of MS symptoms, new ones feel especially troubling–a chilling reminder that my pact with Satan must be set to expire because MS is still lurking, trying to fuck shit up. It’s hard work building the kind of mental resilience required to process and accept so many disabling symptoms. When you wake up with a new problem, wondering what fresh hell this is, you realize that with MS the work is never done. 

So, now we wait. I’m being sent for tests; and in the meantime, my Ocrevus start date gets pushed back. Again. Because it doesn’t make sense to suppress my immune system and then send me into the hospital during a pandemic for diagnostics. 

Whatever’s going on, I’ll cope with it. I always do. I think MS is at its worst when it erodes the things that are fundamental to our identities. How many times will I be forced to slap on a smile, pivot, and reinvent? 

As many times as it takes, I guess. 

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10 Things I’m Afraid Of (With MS)

Recently I ripped off the popular podcast Ten Things I’m Afraid Of by posting my own morbid list on my Insta stories, but with the added qualifier ‘with MS’. Because everyone already knows centipedes and talking on the phone are scarier than death.

Send a text like a normal person.

If you have MS, a healthy fear of prescription costs, PML, and progression are probably already on your radar. Rest assured this light-hearted list is not meant to jack up your anxiety about everything that can go wrong when you have this disease. This is about airing my own brand of neurosis that maybe some of you can relate to. If you don’t have MS, consider this tally a touch of insight into the day-to-day drama of coping with a chronic illness.

Ten Things I’m Afraid Of With MS

1. Dropping Things

I drop stuff all the effing time. Ask The Banker or the dog how many times a day I drop my cane on the hardwood (it’s 87) and they will slowly shake their heads in silent rage. Sometimes I drop something, pick it up, then drop it again. If I’m in a good mood, I assume the universe is providing me with free physio, then give myself permission to skip the gym. That’s a level one drop.

A level two drop is a bit more consequential. Like the time I dropped my cute cigar-box purse at a production of Mary Poppins spilling all my tamps and caths into the aisle. Despite my protests, the stranger-man next to me insisted on picking up my swag until he realized what he was touching. That’s fine, he should grow up.

Because the very, very worst, level 3 shit to drop is something that breaks. Especially if that something is full of liquid, like smoothie or vase-water, and I’m all alone and have to clean it up before someone eats broken glass and the floor turns blueberry. My lack of balance and shoddy hip-flexors make this a Survivor-level challenge where the only reward is that the dog’s not bleeding and I no longer have breakfast.

Oh, what treasures do you hold?

2. Rain

My fear of rain as someone with MS has everything to do with not wanting to wreck my blow-out, because blow-drying my own hair is a fucking nightmare, and it’s impossible to wrangle an umbrella and a rollator at the same time. When I posted this fear on Insta, someone was like, why don’t you just get a rain hat? I don’t know, Becky. Why don’t I just leave the house in a shower cap?

3. Jekyll and Hyde-ing

One day, about a month ago, I woke up without pain. As I found myself assessing this unfamiliar phenomenon, I also realized I’d somehow slept through the night. I felt like singing, or at the very least not scowling. And then I was like, hold up. What is this feeling and who am I?

What if I have this whole other (way better) personality without pain and insomnia? I’m a skosh afraid that having MS facilitates a bitchier, harder-to-be-around version of moi than the ray of sunshine I might have been in an alternate reality. Damn, Becky. I’m sorry for my tone earlier. Thank you for the suggestion.

Update: I just googled rain hats, and Becky can go to hell.

4. Being cold

I’m cold right now, but I’m also afraid of being cold in the future. MS means my temperature regulation is broken, but my anxiety is working just fine. I can work myself up into a state in July thinking about how much January is going to suck in this cold Canadian tundra. Recently, my order of Little Hotties got lost on Amazon and I had to go without this life-saving, foot-warming product for five excruciating days. You don’t even know. Now I feel like I have to stockpile them so that this never happens again. I’m afraid my fear of freezing will turn me into an MS Doomsday Prepper.

5. Speaking of doomsday prepping…

I have too many purses, so I try to make sure there are a few disposable caths in every bag (too much catheter talk? welcome to MS), but occasionally I fuck this up (not to mention I recently discovered that caths for real expire, which does not help my doomsday plan).

One time, after I’d left to do my Lemtrada labs and get a hair appointment, I realized I was sans Cathy when it came time to give my urine sample. This was especially troubling because I’d been saving my pee for the test, and I needed to go. No worries, I thought. I bet the lab has some. They did not. Fortunately, we were next door to a pharmacy. But when I asked, they were like “ew, no”. Okay, they didn’t say ‘ew’ but they might as well have.

That forgotten pee-mate almost caused me to pee my pants (ironic, I know), forced me to return to the lab with a urine sample, made me miss my hair appointment, and cost me an extra $14.67 in round-trip Ubers. In addition to the price of the tiny plastic tube (you don’t wanna know), this particular pee cost more money than the time I was in France and didn’t have any coins for the pay toilet AT A BAR, which meant I had to buy a drink just so I could pee, creating a vicious cycle. Bien joué, Frenchie, bien joué.

6. Getting a cold

If you need a refresher on what getting sick can do to MS, please click here. My fear of flu makes me terrified of hospitals, holiday parties, and most of all, children.

“What’s that scent you’re wearing?”

“Oh, do you like it?”


“That’s because it’s Purell and Clorox.”

It’s not me. It’s you.

7. Seatbelt sign

There are a million things to do before a big trip, and they all come to a head at the last minute. That sigh of relief you breathe once you’re through security, checked into your flight, and ready to check out of your life is what a cocktail at the airport bar tastes like. Oh, my flight’s delayed? That’s cool. I have time for one more vodka soda (soda because it’s important to hydrate). Bonus points if you’re flying Air France where I defy anyone to not drink the wine in those adorable mini bottles.

So, it’s pretty freaking rude, airlines, to ply us like this and then tie us to our chairs and turn on the seatbelt sign. You know you’re just messing with us anyway. Like, I’m not that good at walking, but even I feel like I can handle it basically every time.

I stand with you, Gérard Depardieu.

8. Stranger danger

I don’t have any confirmed cognitive decline (update: I do now!); the lesion load on my brain is light in comparison to that of my spinal cord, where all my damage likes to party. I will cop to having difficulty focusing on any task when there’s competing noise. If you want to talk to me and the radio’s on we’re gonna have a problem.

My real cognitive problem is that I don’t recognize faces. Like, unless we’re related, or we’ve made out (and even then), I’m not gonna recognize you. Dear everyone in my building, I may have had five separate convos with you in the elevator this month, and if I see you at Ezra’s Pound I won’t know who you are.

My ability to rock a blank stare whenever someone thinks I should know them has earned me the reputation of a witch with a b. Luckily, that’s kind of who I am anyway.

9. My world shrinking with MS

MS can take a lot. What’s more maddening to me is what’s taken that doesn’t have to be. As my mobility needs change, I fear my world getting smaller as fewer spaces are available to me. I fear being disabled by my environment as much as by my body. Ok, this one’s a true bummer. Let’s move on.

10. Fish sticks or salisbury steak?

I mostly subscribe to the philosophy that fear is a waste of my imagination; but sometimes I let my flights of fancy run the show, and that’s when I visit a future day-mare where I don’t get to make all my own choices. Seems reasonable, right? Here’s where I lose you.

The choices I’m prematurely wigging out over are food choices. Like, I did not spend the best years of my life cultivating a palate that appreciates stinky cheese and truffle salt only to spend my senior years in a care facility eating boxed potatoes and off-brand chips. I am way less worried about condescending nurses who speak to the elderly in baby-talk than I am about the possibility of being served baby-food. Did you know that most of these places don’t even have a bar???

So, what are you afraid of with MS?

Roosevelt famously blah blah’d about fear being the real enemy, and I will co-sign that fear is the worst symptom of MS. That said, I feel like Roosevelt didn’t totally fact-check his whole thesis, because needing to pee without access to a bathroom is hardly unjustified terror.

Do these fears resonate? Comment on what you’re afraid of with MS, and check out the original podcast.

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9 Things That Will Make Summer Suck Less When You Have MS

9 Things That Will Make Summer Suck Less When You Have MS
It’s summer and I don’t feel like writing existential essays about the plight of a tragic, but beautiful heroine making her way in the world with MS. Feeling tragic is a winter activity. It’s 16 days post-solstice and I want the lazy days I was promised–where I can eat ice cream for breakfast, wear my bathing suit instead of a bra, and stare at my freckles until I’m convinced they’re cancer. If I’m writing anything it’s a reminder to take a nap, to not go camping, to pick up more rosé and to maybe get those moles looked at–if there’s time. 
But unlike teachers and snowplough drivers, bloggers don’t get summers off (we’re an essential service, obvi), and neither does your disease. MS doesn’t take a vacation. Or it does, but it’s your vacation and it’s photo-bombing you in every frame. In fact, summer can be one of the worst times for someone with MS. Uthoff’s phenomenon means that many with MS experience an increase in symptoms due to an extreme form of heat sensitivity that can make it so hard to function you’re longing for back-to-school commercials before the final bell has even rung.
Summer can suck when you have MS, but dear god, so cawinter. So instead of a sad story about summer turning into falling and falling turning into a cold early death, I present to you a few of my top picks to help you sail through the season.

9 Things That Will Make Summer Suck Less When You Have MS

1. Safety shoes that don’t look like safety shoes

I misheels so bad, but there are other options to keep you from looking like you’re auditioning for Shrek The Musical. The sandals you’ve all been asking about are by Ganter, a company obsessed with foot-health and “natural walking”. If, like me, you’re currently rocking more of a supernatural stride, Trend-Able is a great resource for what’s cool and can be worn with orthotics. Trend-Able even has shoe options for dudes.
You don’t have to smile when your shoe game is this good.

2. Clothing that’s literally cool for Trippers with heat intolerance

If you wanna get your vitamin D the old-fashioned way without wilting like every plant that’s ever been under my care, these cooling towels by Toronto-made (holla!) Koldtec™ will keep you cool like Drake and dry like Dry (the French rapper you’ve never heard of). Trippers get $5 off and a bonus ice-strip with code TRIPPINGONAIR5, or a bonus ice-strip and $14 off the bundle with code TRIPPINGONAIR14.

3. Hot packs for the rest of us

While most of me knows it’s summer, my dysesthesia-impacted feet haven’t gotten the message. It’s 30 degrees and I’m on my balcony wearing a sweatshirt and down-filled booties. (Yes, I’m also wearing pants, pervs.) I’ve tried SO MANY THINGS to fix my freezing foot pain and these warmers suck the least. The robots at Amazon who package and send them out in July are like what the fuck, Canada, are you really that cold? No, it’s just me. 

Perfect for skiers and shivering consumptives.

4. Face misters

When I lived in France, I saw people carrying enormous bottles of Evian-filled misters everywhere. I think the whole country needs to discover freon, but there’s no denying the French-girl cool that comes with misting mineral water onto your puffy red face with a $25 brumisateur.
I got this one for free for buying too much make-up. Suckers.

5. The sound of silence

There are certain sounds we only hear in summer–the saw of a lawnmower, the smack of flip-flops, my dad yelling “Close the damn door; I’m not paying to cool the whole bloody neighbourhood”. And while these noises are objectively unpleasant, none hurt my ears so bad as a tree full of clamouring birds at the crack of 5:12. Or my douchebag neighbours hosting yet another late-night laugh-riot. Either invite us, or shut the fuck up, Todd. 
These earplugs are powerful enough to drown out my FOMO while allowing me to get the kind of sleep someone with clinical-grade MS fatigue requires.  
Shouldn’t even be legal–you’re def sleeping through a fire-alarm.

6. Clean-ish hair

The first symptom listed on the pamphlet you’re given with an MS diagnosis should be dirty hair. Right at the top. Between the heat, the slippery surfaces, the effort it takes to lift a blow-dryer to my head, and the four days a full shower takes off my life, most of the time, clean hair isn’t worth it. I’m currently testing the limits of how long I can neglect basic hygiene and still maintain my relationships. So far, it’s 7 days. The first 4 of which are made significantly less gross with dry shampoo; for which, I assume, the inventor received a Nobel Prize.
My favourite from Aveda. Smells like camouflage.

7. Legitimately clean hair

When my 7 days are up and it’s time to re-introduce my scalp to water and soap, I’m lucky enough to live in one of a number of cities that has an Aveda Institute where I can get a beauty-school blow-out for about 15 bucks. WHAT?! Ok, so you have to sign a waiver, but even if my student stylist turns my blond to blue, or crimps where she should be curling, my hair will still look better than anything I could ever do.

8. Underwear you can get drunk and pee your pants in

Technically, alcohol-induced incontinence is not what these knickers were designed for, or at least that’s not the Knix™ marketing strategy. In fact they’re marketed more as high-tech “period-underwear” that can handle a little LBL (light bladder leaks).  They may not replace your current continence care, but if you should happen to introduce two Manhattans to an over-reactive MS environment, you would be pretty protected while wearing this gitch. So I’ve heard. Bonus points for a design that’s so good, so normal-looking, you’ll never have to mention your unmentionables to anyone lucky enough to see them. 
I’ll have two please.

9. Time and Energy

I never travel without Optimus Prime, my cool and comfortable, convertible rollator/transport chair. I surf the walls and furniture on my own time, but when I’m traveling, I don’t wanna waste away in a hotel room, eating $18 chocolate bars, yelling at the slow wifi because I don’t have the spoons left to spend my $18 on a Campari-spritz at a tourist-trap bar the way God intended.  
Triumph Mobility is offering TOA readers a $100 discount and a free cane/bag holder on a Rollz Motion with code TRIPPINGONAIR in the US and Canada. Or click here for New Zealand, here for Australia, and here for The Netherlands. 
This kid knows how hot it is.
What are your summer health hacks?
Stay cool, Trippers. And happy summer! 
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How To Treat An MS Attack With Steroids And Lies

Steroids can fix this, right?

How To Treat An MS Attack With Steroids And Lies

The day before deciding to start a high-dose course of prednisone to treat a flu-induced pseudo-relapse of my Multiple Sclerosis (MS), I went through my usual check-list of pros and cons. I’m familiar with the intense side-effects and general suckitude of steroids at this dose; and if I’m being real, I already knew I was going to take them, but examining the decision felt like the responsible thing to do. 

Cons of taking steroids for an MS attack

  • insomnia 
  • water retention
  • GI upset
  • sore throat
  • temporary insanity
  • my coffee (and everything else) will taste gross
  • I’ll be out of commission for at least a week
  • FOMO – I might miss my nephew’s b’day party
  • am I finally gonna get that fucking hump?

Pros of taking steroids for an MS attack

  • warm feet and freestyle pees for a few days
  • maybe I can stop this slow-slide to the ground
The day before I pick up my script, I’m still struggling to convince myself that the decision to give steroids a shot makes more sense than to ride it out. I look for dramatic signs of worsening – the weakness and slowness that normally terrify me are now soothing me into believing I’m making the right decision by taking the poison. The magic potion of prednisone has worn off considerably since the days when it would booster-cable me back to my baseline. I’m dealing with a pseudo-relapse instead of an actual MS relapse, and my formerly malleable Relapsing Remitting MS (RRMS) has evolved into a clear case of Secondary Progressive MS (SPMS). A lot of doctors wouldn’t go near me at this stage with steroids, believing that the risks outweigh any potential benefit.
Which is easy for them to say, with their upright, functioning bodies and absence of need for Hail Mary interventions. 
But this fever-induced set-back had me and my doctor concerned enough to give it a shot. Here’s how it went down.

The day before steroid treatment 

I make a bone broth, and stock up on applesauce and ginger-ale knowing how badly steroids mess up my tummy. 
Get my hair washed, buy four new books, and go for brunch with The Banker so he can have a recent pleasant memory of me before steroids make me turn on him. 
still vain, tho

Steroids Day 1

I cover all the mirrors so I can remember my face as it was. 
This is my first time getting oral prednisone (as opposed to IV), so I text my blogger friend, Beth (Bethy Bright And Dark) to ask for tips, like what drinking games she suggests for swallowing 62.5 bitter pills in 15 minutes. She’s starting treatment the same day as me, and I feel like it would be fun to place bets on which one of us will cry first. 
Day one passes without incident, and feels similar to IV treatment. 
So far, so good.

15 min was not possible. It took 59 minutes to choke these down.

Steroids Day 2

I wake up with a headache after 3 hours and 17 minutes of “sleep”, but my legs are so chill I can’t make them seize up if I try. 
My cheeks are pink and for once I don’t look like a corpse. 
I check in with Beth and learn that “Umbrella Holder” is a job you can pay someone to do when you need both hands on your rollator. I marvel at all the ways MS is creating jobs and fuelling the economy.  
Later, enraged about not being able to get up on a chair to reach a high shelf, I hurl an open box of chocolates into an upper kitchen cupboard. In defiance of physics most of the chocolates stay inside the box which only makes me angrier. 

Steroids Day 3

The sweet spot of treatment, I haven’t slept and I don’t care. 
My lack of spasticity is the bomb. 
My balance is drunker than normal and my bowels are MIA, but my feet feel gloriously fucking temperate. I decide (and say it out loud) that I would endure this treatment every couple of months just to have a day or two where my feet aren’t confusingly burning and freezing at the same time. 
Realizing I don’t own any red velvet pants, I go on a frenzied online shopping spree. This feels reasonable. 

Steroids Day 4

My three day treatment is over. I do a timed walk that’s half a hallway less than the day before I started treatment. I feel too tired to have feelings about this. 
My new books are still in the bag; I’m too spacey and in pain to read or even watch TV, so I spend time staring at the wall, willing time to pass. 

Steroids Day 5

I wake up after 9 glorious (medically induced) hours of sleep.
After an actual bath I slather my legs in special-occasion Hermès body lotion, because sometimes not wanting to die can feel like a special occasion. 
Just as things are looking up, I watch 2 episodes of This Is Us and feel tricked into a meltdown. I cry my eyes out because Jack, and life, and the Big 3. And. I. Just. Can’t.  
I text Beth. It’s a draw. She’s melting down too. 

Steroids Day 6

My stomach feels like it’s bleeding and I question my ability to make good life decisions. I vow to God and Beth that steroids and I are never, ever, ever, ever getting back together. 
Decide that, for my suffering, I definitely deserve $700 Dior sneakers. 
Don’t actually buy the shoes. 
Maintain I deserve them. 

Steroids Day 7

I have to be somewhere at 8:00. In the morning. I knock over my bedside lamp and shatter the bulb into a literal trillion pieces just to give The Banker something extra to do at 7.15, while I lay limp and useless in bed. 
Finally decide to look in the mirror and fail to recognize my stretched and featureless face. 
Notice a new burning pain on my torso and convince myself I have shingles. (I don’t have shingles.) 

Steroids Day 8

I manage to leave the house despite feeling weaker and slower than I did before treatment. 
I eat a full meal, including leftover birthday cake from my nephew’s party (that I missed). 
I’m coming out of the effects of the drug, and it’s a huge relief – this was the hardest course of steroids I’ve ever done, but the treatment has failed me. 

Steroids Day 10

We have theatre tickets, so I pace myself all day, careful not to blow through too many steps. I take two breaks during the day to lie down for a full hour. 

Briefly wonder if it’s possible that steroids have actually made me worse, but feel too afraid to Google it.
The effort it takes to walk from the apartment to the street breaks me. 
On the way to the theatre I snap at The Banker and cry in the Uber. 

You can’t even tell how psycho I am.
I told myself steroids would do something. And that part wasn’t a lie. The lie was that they would do something good. Some small thing to ease the burden of MS; to give me some fraction of increased strength or endurance – even if it’s just a taste; a temporary feeling of how it used to be, or a peek at what potential remains. 
The lie I told myself was that it was worth it. The lie I told myself was that my disease is still modifiable. The lie I keep telling myself is that I have some control or even influence over what direction this thing takes. 

Steroids Day 12

I continue to find pieces of shattered lightbulb in unexpected places. 
I appreciate that my coffee once again tastes like delicious coffee. 
I acknowledge that my brain on steroids doesn’t always tell me the truth. 
I try, try, try to believe that just because I’m not yet as strong or as fast I was 5 or 6 weeks ago doesn’t mean I can’t still get there. 
I count my blessings and pack my bikini. I’m spending the next phase of my recovery on a beach with people who love me. And if I can’t walk to the bar, I’ve got Optimus Prime and The Banker to support me. 

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My Worst MS Day. Ever. So Far.

My Worst MS Day. Ever. So Far.

Last Monday was my worst MS day. Ever.

I haven’t had a lot of ‘disease activity’ over the last year. Don’t get me wrong, Multiple Sclerosis affects me every day; but that’s old news, the stuff I’m used to. After coping with, and recovering from, a sudden decline in my mobility last Christmas, I spent most of 2018 feeling grateful for all the steps I’m still able to take, and proud of how I’ve been able to focus on what I can do, without obsessing over scary hypotheticals. 
It’s possible I’ve been a little too hasty in giving myself props. After all, I’ve had Multiple Sclerosis for a thousand years already; I should know a thing or two about living with chronic illness. MS is always going to be hard, but it’s relatively easy to keep your shit together when things are stable.
Of course, this is MS, and stable only lasts so long.
And so it was that last Saturday I woke up in New York City, in town for a Very Important Bestie’s Very Important Birthday, feeling only slightly rougher than usual. I blamed my heavy vocal cords on dry airplane air, a late night, and my attempts to channel Eminem at a karaoke dive-bar the night before. I didn’t have time to give my fatigue too much thought. I was in the Big Apple at Christmas-time and festivities were afoot. 
As the day wore on, it became harder to ignore the congestion that was building in my chest, but ignore it I did. There was no way I was going to be sick during a weekend in one of my favourite cities, to see one of my favourite people, at one of my favourite times of year. I threw on a red lip, shoved a wad of kleenex up my sleeve, and made the sign of the cross, before heading to my VIB’s VIB dinner at a legendary New York steakhouse.
What’s her secret? That wristlet is full of caths and there are 18 tissues up my sleeve.
We arrived at the restaurant, ready for good times. There were three or four steps into the dining room, because big cities haven’t gotten the accessibility memo yet. This was annoying, but manageable. As The Banker tucked Optimus Prime, my convertible rollator into a corner, a friendly waiter helped me negotiate the stairs down to the table where our friends were waiting.
We had an amazing meal, my last pleasant memory of the weekend that would be cut short. By the time dinner was over, I knew with a sinking feeling that I was, for sure, coming down with something. What I didn’t know was just how badly whatever bug I was battling was about to start poking the MS that had been relatively quiet this past year, with a stick.  
Enter the pseudo-relapse. 

Unlike a true MS exacerbation that happens when there are new lesions on the brain or spinal cord, a pseudo-relapse can be caused by things like infections, increases in body temperature, exercise, stress, lack of sleep, a butterfly flapping its wings. A pseudo-relapse wakes up old symptoms that may have resolved, or makes existing symptoms worse. And in my particular case, on this particular week-end, much fucking worse.

When it came time to leave the restaurant, those same stairs I’d negotiated with a cane and the arm of an anonymous man were suddenly impossible. In the span of a few hours I’d gone from prancing around Manhattan, shopping and posing for pics, to being carried up three stairs in a wheelchair by two burly men. Okay, one was a waiter, and the other The Banker. Neither were particularly burly.  
Though it was cold and drizzly and the hotel was 30 minutes away, I didn’t want to take a cab because I didn’t think I could physically get out of my chair to get into a car. So we walked. I mean, The Banker walked. And pushed. I sat, wrapped in the blanket I’d taken from the hotel, feeling defeated and small after the whole restaurant hoist, ready to sleep it off and start fresh the next day. 

But there was nothing fresh about the next day. 

As I lay in bed, flat on my back, my anxiety turned to dread when I realized I couldn’t sit up, turn over, or bend my legs. At all. I woke The Banker who pulled me into a seated position. As soon as he let go, I went crashing back down; both of us shocked to learn I couldn’t hold myself up. 

I knew I was running a fever, and figured I was getting the flu. I know what that can do to MS. But just because the pseudo-relapse isn’t a real relapse, doesn’t mean it can’t do real damage. Here’s something I just happened to have read on Bart’s MS a few days before my deep dive into a new level of disability.
“Every time you get an infection it causes your immune system to produce cytokines, or inflammatory messengers, that travel to the brain and boost(s) the activity of the microglia. The hot microglia then exacerbate the damage that MS is doing to your brain and spinal cord. This is why many of you tolerate infections so poorly and often don’t recover back to baseline after a severe infection.”
I’m not exactly a science girl, but it sounds to me like cytokines are Satan’s envoy, sent to provoke the hot microglia into a bar-fight in my brain. None of this is good. The possibility of not recovering back to baseline is what makes colds and flus such a freaking nightmare for people with MS. Like a real life visit from a very dark Dickensian ghost, for a few days this Christmas, I had a glimpse into a possible future where I am less independent (the gentlest way to put it). This past week-end, I got to try on what it feels like to have to ask for help. 

For Every. Single. Thing. 

My pseudo-relapse lead me to experience the uncomfortable dynamic of being dependent on my partner, of apologizing for things that are beyond my control, but I nonetheless feel responsible for. I felt the demoralization that comes with the constant please and thank you’s for things I never wanted to need.  

And I hated it.
Until this past week-end, I’d spent the past year feeling pretty kick-ass and mentally strong. I haven’t been wigging out over future disability day-mares. And now I suddenly find myself jolted back into consideration of a future that once again doesn’t feel so improbable. It’s a future that feels like it’s one step away instead of ten. And it’s just too hard to imagine. 
So I won’t imagine it. Or I’ll stop imagining it. Now that I’ve given voice to my fears, I must put them back in a box and light them on fire. As my flu symptoms began to resolve, my strength and independence blessedly began to return. I’m still recovering, and fingers crossed, I will get back to baseline. 
Today at least, I am okay. And that has to be enough. 

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8 Things To Do When MS Makes Winter More Painful

Please don’t make me go outside.

8 Things To Do When MS Makes Winter More Painful

A lot has been written about heat intolerance and MS, and yeah, put me in a hot bath and I’m al dente in 6 minutes or less. But somehow, even in that bath, my feet manage to maintain a corpse-like grey and still feel cold. If you have MS, the heat might mess you up, but feeling cold can be its own kind of torture. 
It’s called Dysesthesia. Like a twisted game of Telephone, it happens when damaged nerves send inappropriate messages to the brain. It can feel like pins and needles, an electric shock, cold, or burning pain. 
Just like everyone’s MS is different, so is everyone’s MS-related Dysesthesia. For me, it means that regardless of room temperature or time of year, whenever my nerves decide to drunk-dial my brain to talk about their feelings, my brain (who doesn’t speak Vodka), decides I’m cold. And not a cute, ooh, I’m a little chilly, let’s get cozy kind of cold. Screw you. It’s a bone-deep, painful, unholy Arctic chill, that ironically feels more like being on fire than anything a sweater could solve. 
There’s nothing cute about this look.
Or this one.
My attempts to cope with this constant confusion include fully-clothed visits to the sauna in my building, regularly blow-drying my body, and buying coffee just to hold the cup. I use the car seat-warmer in the summer, wear down-filled, outdoor camping booties in the house, and my most recent Make-A-Wish is to have all the hardwood ripped out and replaced with heated floors, because my feet, by far, bear the worst of it. My toes look so disturbingly undead that whenever I get a pedicure, the aesthetician tries to scrub off the remnants of what she assumes must have been blue polish. 
Someone at the MAC counter asked if my nose is red because I drink. Rude. My mom knit me this itchy AF beak blanket because my nose is THAT cold.
All of these strategies are bullshit, of course. I’m still Jack Nicholson at the end of The Shining cold. While there are medications that can help treat these sensory mind-fucks, I haven’t found any that work for me. But talk to your doctor, because everyone’s MS is different, and as every fangirl knows, winter is coming.
Don’t let anything come between you and your garbage fire.
The good news is, while it might feel like my flesh is dying, there’s no actual tissue damage occurring. The bad news is, this kind of pain is hard to understand and can make you feel like your own brain is trying to gaslight you. Don’t expect much validation from medical professionals either. MS doctors know you have bigger things to worry about, like being able to walk, and see – I once had a neurologist tell me that eventually menopause would take care of this symptom – he thought he was hilarious, and sure, he did look like a muppet; but sometimes it’s the sensory that can have the biggest impact on day to day quality of life.  
Dysesthesia is no joke, Dr. F.
I was born in Montreal and live in Toronto. That’s Canada, bitches. The capital of winter. But just because winter is in my DNA doesn’t mean I have to love it. I don’t. I hate winter. Hate is a strong word, and Jack Frost can go to hell (but like, save me a seat, cause it’s warm there). It’s not just the cold. Negotiating a rollator on unploughed sidewalks sucks. Bladder urgency is not conducive to 30 layers of clothing. Chapped lips, insufficient sunlight, salt stains, and static cling all leave me asking myself Why the fuck do I live here?

diversity, healthcare, opportunity, freedom, food culture, regular culture, brunch culture, friends and family, maple syrup, tolerance, Tim Hortons…

Oh right.  #sorry
I can’t love winter, but I can try to hate it less. In my next life I’m coming back as the surface of the sun, or Fat Elvis, but until then, I want to learn how to embrace the season without freezing my actual tongue to a pole. I’m trying to adjust my attitude by focusing on appreciating the positive things you can only really do in winter. With that in mind,

8 ways to make winter suck less with MS:

Winter food

Strawberry shortcake and sangria are over; let it go. And while no reasonable person looks forward to brussels sprouts, beets, cabbage, or any of the gross things that grow in tundra, it doesn’t mean you can’t eat your way through winter. Comfort food is the solution, and if you can get someone else to make it, even better. I’m talking shortbread cookies, beef stew, mashed potatoes, mac and cheese, grilled cheese, cheese fondue, basically anything with melted cheese. 

Drink through it

Two words: Seasonal Lattes. Call me basic, but there’s something seriously soothing about a candy-cane cup of caffeinated warm milk. And only in winter can liquid chocolate be considered a legitimate breakfast food. Adding Irish cream, Kahlua, or Peppermint Schnapps to your afternoon coffee seems like substance abuse in the summer, but when it’s dark out at 4:30? Fair game.


Let yourself go

Don’t even worry about what all this extra eating and drinking is doing to you. Nobody can tell what’s going on under that snow-suit, and did I mention it’s dark? Now’s the time to embrace winter weight, stop shaving your legs, or giving a fuck; that’s spring’s problem. You don’t have to wear pants with a waistband anymore. If you do have to leave the house, wrap yourself in a blanket scarf, and suddenly you don’t look derelict, you look European. See you in April, bra.

Make like the Danes #hyggelife

Despite living in a damp, sunless country, the Danes have been shoving their happiness down our throats since happiness lists were invented. From the land of Lego, stylish mobility aids, and dogs that look like tiny horses, comes Hygge; the hug you can give yourself. If you don’t know about this culture of candles and coziness, I don’t even know who you’re following on Insta; but if you’re like me and you love a trend, a quick fix, and the North-American commercialization of a pure, simple tradition, Hygge is for you! 
Denmark: We’re better than you.

Make your friends come to you

The best thing about condo life is never having to shovel snow or take out the garbage. The second best thing is having neighbours that become good friends. My building buddies and I can come and go between our apartments in our pyjamas. It’s like living in a dorm but without the academic consequences of weeknight wine-drinking, and nobody has a Che Guevera poster on the wall. Between board game night, movie night, and Ubereats, I literally never have to go outside. (Wait, don’t you have a dog? Yeah, that’s The Banker’s problem.)

But actually, exercise

Before cabin fever turns you into a murderous recluse, realize that exercise is not only essential for your physical health, it can also have a powerful effect on mood. If you’re one of those people who actually enjoys cold exercise winter sports, congratulations, you’re better than me. For everyone else, figure out a way to move. The MS Gym has free online tutorials with workouts every MS’er can do at home at every level of mobility. 


Check yourself

Seasonal affective disorder (SAD) is a real thing that can exacerbate depression, making winter particularly difficult, and those of us with MS are at a higher risk. Meditation, those fancy light lamps, cognitive-behavioural therapy (CBT), and certain medications can help. If you’re more than a whiny, winter-hater like me, and feel legit depressed, don’t suffer; talk to your doctor. 

Consider that not all squash is gross

If you’re still reading this terrible advice, I feel compelled to provide you with a recipe that’s a little more in-line with a healthy MS lifestyle than the suggestion you stay in bed with an electric blanket, a bag of Miss Vickie’s chips, and all 7 seasons of Gilmore Girls. Seriously. Don’t stop your Wahls, your OMS, your Swank, or whatever MS wellness plan you’re following just because some rando on the internet tries to rationalize day-drinking your way through winter. 
This butternut squash and Italian sausage soup is gluten-free, and dairy-free. And not on purpose either! Take out the sausage and voilà, it’s vegan!

It doesn’t taste as good as summer feels, but it’s pretty darn close.
Roast a butternut squash.
In a soup pot, sauté some Italian sausage out of its casing, then add onions, carrots, celery, garlic, whatevs. Maybe a smidge of apple cider vinegar if you feel like deglazing, but does anyone actually do that?
Add roasted squash, a handful of fresh sage, several cups of stock, and a glug of maple syrup (obvi the real stuff, I hate winter, I don’t hate Canada). Bring to a boil, then simmer until you feel like it. 
It’s 102 days until spring. Stay warm, Trippers.

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Feeling MS’y: Trapped In A Bad Multiple Sclerosis Day

Get me the hell out of here.
I feel MS’y; which is to say, I feel lousy, useless, beat. Like I’ve been mother-fucking voodooed. Of course, I have multiple sclerosis and it affects many parts of my life every damn day; but, that doesn’t mean I feel MS’y every day. Feeling MS’y is when you just can’t. It’s the worst of the worst of what fatigue can do to you, and it just shuts you down. Feeling MS’y is what stops you in your already slow, drunk-walking tracks.

I knew this was gonna be a rough day when I woke up at 4:13 am to pee. Not because I don’t always wake up at 4:13 to pee (and at 1:35 for that matter). No. I knew it was gonna be a rough day when, even after lying down for 5 straight hours, I twisted out of bed at 4:13 to find my legs weak, stiff, and straight-up refusing to point in the same direction at the same time. 

I sighed knowing this was bad news; 4:13 is normally when my stems are their strongest; chilled out from doing nothing all night, with enough pre-bedtime Baclofen still in my system to keep them from seizing up. 
Seizing legs is 8:00 am’s problem. 
At 4:13 I can usually make it to the bathroom sans Blanche (my classy new walking stick). But not last night. 
I lurched my way to the ensuite, like the graceful goddess I am, and realized it wasn’t just my legs that were uncooperative. My whole body was feeling the kind of tired, that is way beyond tired. I was suffering full on MS fatigue. That underwhelming bullshit word that is all we have to sum up what it feels like to have been visited by a pack of Dementors. Surely the Germans must have a better term than “fatigue” for this soul-sucking vibe; but since I’m too wiped to even google what that word might be, I’ll just stick to what I’ve been using for years, and that is to simply say 
I feel MS’y. 
Now I’m trying to go about my day, fighting with myself back and forth about the decision to go or not to go to my 2:30 massage appointment. On the one hand, I only need to rally for a few steps to and from the car. Then again, there’s the physical energy it will take to haul myself onto that skinny massage table, or the emotional energy it will take to have the therapist haul my weak heavy legs up for me. And let’s not forget the effort it takes to get undressed and dressed again, and all of this suddenly feels impossible. Sounds pathetic, I know, but putting on pants has become a once-a-day on a good day deal. 
The struggle is real. 
Figuring out how best to look after myself when it affects others is always overwhelming, and I can’t even hear myself think right now because I’m breathing through my right ear, which is another thing that creeps up when I’m exhausted, and please tell me someone else with MS experiences this annoying af phenomenon, because my docs just shrug their shoulders like I’m making it up. Obviously if they don’t understand it, it must not be real.
So it’s an MS’y day. Which means listen to my body, but not my emotions. 

My body says stop, but my emotions say freak the fuck out, you’re never getting better. 
My body says clear your sched, but my emotions say you’re gonna let everyone down and if you cancel your massage they’re for sure gonna kick you out of the clinic.
My body says have a nap, but my emotions say have a cocktail, it’ll take the edge off, it’s summer, and you deserve it. 

My body says good point, but who’s gonna make that cocktail? The Banker’s not home for another three hours and you’re too messed-up to walk to the kitchen. 
You’ve won this round, Body.
This is Day 3 of this most recent MS slump, caused by who knows what. Did I over do it on the weekend? Yes. But only by old lady standards. Like, I went to the Farmer’s Market on Saturday. It’s not like I picked my own fruit, nor is Farmer’s Market a code name for a rave. On Sunday, I sat on my bum at a stadium for four hours while the Yankees kicked the home team’s ass. And I only drank water. 
Even if these tiny attempts to live like a normal have a price to pay, it seems excessive that I should still be footing that bill three days later. And despite all this hard living and partying, I’ve been going to bed early, saying my prayers, and eating clean. It’s just that sometimes, MS doesn’t give a fuck. Or, I dunno, maybe Jesus doesn’t like how much I say the F-word. 
So I give in, lay down, and ride it out. I’ve been here before. In the end, I bailed on my basically free massage and laid down quietly in my room for two hours while someone else cleaned my apartment. 
I still haven’t learned to meditate, but I have learned a thing or two about tempering my hysteria when things feel dire. Just because I felt like this today, and yesterday, and the day before yesterday, doesn’t mean I will feel like this tomorrow. This is MS.
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